Chronic Fatigue Syndrome: 10 Resources Shine Some Light On XMRV
Virtual constellations of blogs and websites revolve like satellites around the weight and gravity of Chronic Fatigue Syndrome. Each of these sites is a thing of beauty and value, representing a world unto itself.
It would be impossible to highlight all of them but I've selected a few for you to explore.
Some action in the Chronic Fatigue Syndrome ghetto has gotten us craning our necks on our cots these days. Or ... there might be some action.
We're hearing some rumbling about XMRV. Might not come to anything, or then again we might see a batallion of champions burst into view any minute now.
Can't see anything yet. All the neck craning and eye strain and guesswork doesn't bring anything into better focus but we can't help it. Until we can see something we're listening very hard to every rumble.
Here are ten places you can go to and put your ear to the ground and hear something you can understand. I've listed them alphabetically so I don't have to try to rank them. Some use Chronic Fatigue Syndrome or CFS, some CFIDS and some ME but all share the same vision.
1. Amy Dockser Marcus' Wall Street Journal Health Blogs on XMRV
Amy Dockser Marcus' blogs have been an unexpected blessing.
While most of these sites are part of the CFS ghetto, by people with CFS for people with CFS -- and seemingly causing little stir outside of our CFS borders -- Marcus writes for the Wall Street Journal.
We're frankly not used to people from the outside showing an active interest. We are thankful to Marcus for shining her spotlight on us.
2. CFIDS Association of America
The CFIDS Association is a charitable organization which has been around since 1987 and has invested over $28 million to find ways to heal CFS and to alleviate the suffering.
3. Christopher Cairns' blog CFS Patient Advocate
Christopher Cairns' daughter is sick.
We value and respect the experiences of all of our HERWriters, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice although we hope you can gain knowledge from their insight.
Add a Comment16 Comments
Journalist Adrienne Dwello posts about fibromyalgia and chronic fatigue syndrome at About.com
July 28, 2010 - 5:49amhttp://chronicfatigue.about.com/
This Comment
Thanks for posting this.
Adrienne Dwello has an excellent resource which she has been faithfully building over a period of time.
This is the problem of only being able to post 10 sites. There are so many other valuable sources that people need to know about. Adrienne Dwello's is definitely one of them.
July 28, 2010 - 6:10amOne of the oldest sites is Co-Cure. It is not a discussion board, but rather a fast way to find out about the latest research and notifications regarding issues important to PWCs. There is also a Good Doctor List for those seeking a doctor in their area or to post about your own doctor if they are particularly helpful for CFS patients or those with similar diseases.
http://www.co-cure.org/
July 28, 2010 - 6:06amThe comments may well end up being the best part of this article. I hope we end up with a long list of CFS resources for people being chronicled here.
Keep 'em coming.
July 28, 2010 - 6:12amDan Marcoli's site, ME-CFSCommunity is part discussion board and part expert explainers and membership is free (although monetary contributions to keep the site running are accepted).
July 28, 2010 - 6:33amFor example watch "XMRV, CFS/ME and You" by long time CFS and HIV expert Dr. Nancy Klimas in a 12 part video series produced by the ME-CFSCommunity. Or use the Ask Dr Hyman column to directly communicate with our resident physician.
http://me-cfscommunity.com/
Thanks Jody.
CFIDS Assn of America distributes a lot of misleading and false info and doesn't truly advocate for or represent patients. Also, imo Cort Johnson needs to be taken with a grain of salt.
Osler's Web and Mindy Katei's blogs are the best sources.
-Justin Reilly
July 28, 2010 - 7:34pmhttp://standup2me.blogspot.com has a HUGE list of websites and fellow bloggers and stays current with ME/CFS /FM/XMRV info..
July 28, 2010 - 10:22pmJody - you write that you 'found a treatment' that worked for you; have you written about this anywhere? I took a quick look at your website and blog, but couldn't find any details. Would (like many others, I assume) be interested to learn what has worked for you.
July 29, 2010 - 12:12amAnd, as you appear to be in Canada, I would just like to mention The Nightingale Foundation and the work of Dr Byron Hyde, who has written useful information on diagnosing ME.
Nicky Reiss
www.nickyreiss.blogspot.com
Hi Nicky,
Thanks for the information.
You are not the first one to say that you're having trouble finding the specifics about my treatment(s) on my website and blog. There is a fair amount of information about this on my website but it seems that it is too spreadout for readers to lock onto.
I'll see what I can do to get a comprehensive picture of what's been working for me into one article, or failing that, into one section on my website.
I operate on CFS time in many respects still so this may take awhile to get it pulled together. But I will get on it and get something on ncubator.ca. Promise. :)
Thanks for including a link to your blog. I will check it out as well.
July 30, 2010 - 5:49pmWhy was my post deleted?
PR and Cort Johnson support the Lightening Process and Faith Healing. It's the worst place you can go if you have XMRV.
July 29, 2010 - 12:51am